Disclaimer: Although the cases I discuss are true, to protect the identity of my patients and myself certain details may be changed. Examples of items that may be changed include a person's gender, age, gravidy and parity, and so on.

Sunday, July 08, 2007

Yes II

Whenever I talk about resuscitation of extremely preterm children, as I did in my most recent post, a couple of issues keep coming up in the comments.

One issue is the thought that when deciding on what to do with a, say, 23 weeker, we should look at the baby and see how he is doing before deciding on resuscitation. If he's active or crying, then go for it, and don't if he's not. As one commenter put it, we should look at his "will to live." It sounds nice, but there' s a problem with it: how a 23 to 24 weeker does in the delivery room has little bearing on their eventual outcome. Kids who look great might end up severely impaired and vice versa. In fact, even kids who need CPR in the delivery room don't necessarily do worse than the others.

A variant on the above is to see how the baby does in the first couple of days and stop heroic support if the baby is doing poorly. I agree that we should always be reassessing the baby's chances and discussing them with the parents, but there are a few practical problems with this. If the baby has a massive intracranial hemorrhage, then it can make it relatively easy, although still heart wrenching for the parents, to stop support. But even kids who have a normal head ultrasound at age two or three days can end up in the severely disabled group. It's just hard to predict. Also, although ethically stopping life support is equivalent to not starting it, parents don't always see it that way. It's probably easier for them to not start it than to stop it.

Another issue has to do with whether Scandinavian results can be extrapolated to America. Put another way, as one commenter did, you should see what your local results are and discuss those with the parents. Excellent points, but again things get a little sticky. The problem is that one of the factors most important in outcomes is socioeconomic status. Premies from homes of educated parents do better on intelligence testing and so on than premies from other homes, presumably because there is more stimulation offered to the child, more books read to them and so on.

So, if we're saying that groups with worse long term outcomes - a higher chance of disability - should perhaps not be resuscitated, then we're getting pretty close to saying that kids from lower socioeconomic groups are less deserving of resuscitation. And that's just a small step away from saying that poor black kids are less deserving of resuscitation, and I don't even want to get close to saying that.

Discrimination is a problem that's almost inherent when we use quality of life to guide us in our decisions to resuscitate or not. Usually it's discrimination against the handicapped that is mentioned, but I think that discrimination on a racial or socioeconomic basis can occur as well, and personally, I would really like to avoid that.

24 Comments:

It's really quite simple, get true informed consent from the PARENTS and take their direction. You are not God and should not play him, on TV or elsewhere. You will walk away and go home at night. You will not raise this child. You willnot be the one who might be bankrupted by this child. You will not get divorced over this child. If the parents have accurate information, let them decide. Some will chose heroic measures and will accept whatever difficultieslie ahead. Some will not be willing to take the chance. You have no right to "roll the dice" for them. You may not agree with their decision but it is theirs to make. They are the PARENTS.

I have come to really look at the concept of 'informed consent' in a different way after five years of doula work and 2 years of speaking/reading med students and physicians online, in my desire to go to med school myself.

I'm currently 24 weeks pregnant.

Neonatal doc, I don't envy your position. How do you give informed consent to a woman who is unconscious at the time of birth, when decisions must be made, and no family is present? How do you give informed consent to someone who doesn't speak the language and there is limited or no translation available? Or to someone who is unable to comprehend the information due to mental disability, or a drug problem, or just plain old lack of education/experience? How do you give informed consent to a 13yo girl? Choose any of these scenarios and run with it... the responsibility is the parent's to decide what must be done, but the onus is on the physician to make sure the parent has the information they need to decide. There are aspects to medical decisions that would take a whole class to understand all the risks and benefits, decisions that must be made within minutes or seconds. It's not always so simple as 'get true informed consent.' I hate to say that, I feel like I'm betraying my profession by saying it. But I have the luxury of working with women who are already aware that there is a lot they don't know, who desire to know more, and who want to access every resource so that they can make informed decisions. It's a small, SMALL fraction, I would wager. Not that all parents don't want to know, but many parents use the doctor's recommendation as their compass, not their innate knowing, their intuition, or recognizing their lack of information.

As I mentioned, I'm pregnant, and ND's comments have popped in and out of my mind since I was about 16 weeks. At 18 weeks I had been feeling consistent movement every day for two weeks (this is my 3rd baby), and at 18 weeks I went a whole day feeling nothing. I called my OB's office and the nurse told me 'not to worry' unless I was in labor, but if I was concerned I could go to the ER (which would cost me $75, just for someone to hold a doppler to my belly for a few seconds) to have the heart tones checked. I realized that at that gestational age, if the baby was dead, waiting until tomorrow wouldn't bring the heart beat back. If the baby was in trouble, there wasn't a way to save it at 18 weeks, so knowing would just stress me out. If the baby was fine, it would still be fine in the morning. I opted to wait, and was rewarded with some good thumps shortly thereafter. I was angry that that nurse dismissed my concerns, telling me that I shouldn't worry until 28 weeks if I didn't feel movement every day. If I had been a first time mother I might have been terribly upset and afraid - but thankfully after giving these issues much thought after ND's discussion of it on his blog, I had made a decision about when to worry and when to let go.

I don't know what I'd do if I went into labor today. I'm 25 weeks on Wednesday, 2 full weeks later than the 22/23 he discusses here. I'd have to decide in the moment what to do. I tell myself I'd say, "Do nothing." But I think of seeing that tiny doll, my child, and I can't help but think I'd give my own arms to make sure it lived. I don't know.

I agree absolutely that 'look at the baby at birth and decide' is the WORST possible policy for extremely preterm babies. Unfortunately people, especially the OB's ask us to do this all the time and many neonatologists believe that they can tell in a snap second which baby should be resuscitated and which should not. This is foolish. In fact there was an abstract [Abstract No. 7932.3] at the PAS meeting in Toronto by Couture et al on exactly this same concept. The title was ' Vigorous at Birth: Does It Matter?' - their conclusion was "There does not appear to be any justification for making resuscitation decisions in the delivery room based on the condition at birth: this does not clearly differentiate infants who will do well from those with poor outcomes."

Red, the decision is still with the parents. If they are better informed, so be it. If they are less informed, so be it.

The doc doesn't "give" them informed consent. It is up to those pregnant women/couples to seek out info and to prepare. What info the neo gives them is coming way late in the game and at a time when they are emotionally distraught. Info given earlier on can be digested slowly, talked over again and again, and followed up with their docs.

After all, the preparing/nesting thing is rather universal--the more well-to-do paint and buy baby furniture and accessories for their nursery; they have baby showers, knowing they need shirts, sleepers, baby poweder, etc.

We all prepare---just seeking prenatal care is preparation. Women thinking it through (as you did at 18 weeks) about wanted and unwanted outcomes can begin at a prenatal visit, midway through the pregnancy--hey, a pamphlet from the perinatal assoc. in their area will do for starters. Their OB/Gyn has pamphlets and books in his waiting room . . .

Hopefully that OB will initiate a discussion, or plant a seed re: prematurity or other unwanted outcomes. Or the office staff, R.N.s can be charged with that duty.

It can work.

ND, I think you are stretching when you make socioeconomic status or race a big issue. "Nature," the very biological fact(s) of prematurity and low birthweight are overwhelming and cannot be erased by "nurture," being raised in a home with more income and more books. The people on the online preemie support lists are tremendously well-educated, articulate and middle class for the most part---their preemies are still severely impacted, no matter how many books or what level of therapy (or even costly alternative treatments) is provided.

Education is the great leveller. Any child of any race or socioeconomic status with risk factors can be in a Birth-to-Three program anywhere---No Child Left Behind. The kids then go into early childhood programs at age 3 till age 6. Then more special ed with therapy from OTs PTs and Speech therapists---up the wazoo. Even with all that going for them, the preemies still have their severe problems. It is nature. It is biology.

How in the world can an parent make an informed decision, even when provided with information by their neonatologists, when they are on a Mag Sulfate drip and hanging upside down and panicking/hoping to keep the baby/babies inside for as long as possible? It wasn't as if we had access to tons of info in Sharon's hospital room in the Labor and Delivery unit when she unexpectedly was admitted, 80% effaced and 4 cm dilated at 23.0. We heard (loud and clear) what the neonatolgists told us---and they were VERY sober and conservative vis-a-vis potential and even probable outcomes. But we could not really manage to supplement this ourselves. The idea of having us take a course in NICU 101 is a pipe dream. Maybe long before this was an issue this would have been a great idea, but not once the emergency admission happened; for God's sake, Sharon couldn't even go safely down two floors (via elevator) to visit the NICU herself, and with HIPPA, we couldn't get specific information about how the 23 weekers in the unit at that moment were doing (they both made it through, btw, and it's too soon to tell what their outcomes will be). So, while the idea of truly informed consent works oh so nicely in theory, in practice it's a pipe dream, at best. Add to all of this the sheer emotion of the situation, and you've got a mess. I, for one, appreciate all of the guidance the neonatologists offered to us, am grateful that they were realistic about outcomes in terms of mortality, morbidity, and disability, and that they did what they could to make sure that the babies that Sharon delivered were well taken care of when WE made the decision to intervene on their behalfs. We made that decision with their help, and we revisited that decision at various junctures during those first few weeks when crises arose. We lost one of our twins at 18 days after trauma that was highly likely to leave her in a persistent vegetative state befell her and brought our second twin home at 4 months. We have no idea how Hallie will fare down the road, but right now she's crawling, pulling to stand, beginning to vocalize, has on-target motor skills, and clearly is very very happy and generally pretty healthy. We consider ourselves lucky and know that our situation could have been very different. But in the end, at the risk of repeating myself, we are grateful that she received sensitive neonatological care of the very sort that ND embraces.

It's a tough call when you don't have a crystal ball, and neither parents nor neonatologists have one. When you deliver a 23 weeker, how they do in the delivery room, the first few days, and in the long term all vary. At the time of delivery, there is usually no way to predict their NICU course, let alone their long term outcome. So I suppose the decision to "roll the dice" should be the parents. I have commented MANY times that I think it is extremely difficult for a parent to decide this while in active labor, especially when they are told there IS a chance. But nevertheless, if the parents do not want to try and resuscitate, I guess they have a right not to. When the parents don't have that right anymore is unclear at best. Especially when you are dealing in days. 24 weeks and 6 days...25 weeks and 0 days, etc., etc.I completely agree that continuing treatment should always be reassesed along the way; and that parents and the NICU team should have frequent conversations about their child's care.A lot of people talk about accurate information, and demand neonatologists give it to them. What information are they suppose to give? They can not look at your 23 weeker on any day and give you an absolute answer as to how they will do long term. They just can't. They can throw statistics from this study from this year out, they can give you their own NICU's stats, they can give you their personal and professional opinion. But they can't tell you what you want to know. No one can.They can't tell you if he/she will have CP, can't tell you how severe the CP will be if he/she is found to have it. The neo can't tell you how your child will rate their quality of life, can't tell you how they will do in school, or anything else. Maybe in a case of a severe bleed, they can give you probable information, but they still can't tell you exactly what to expect.Your neo definitely can't tell you if your finances and your marriage will be able to handle it. You as a parent have to decide if you can manage a child that has a possiblity of having special needs. You as a parent have to decide if you want to give your child a shot at life even if there is a chance they may have disabilities. The neonatologist can't give you a definite yes or no about whether your child will have any of the issues preemies suffer with; they can only give you the statistics that no one can seem to agree on.It sucks, and I know that personally. I saw first hand how different 23 weekers NICU courses are, and I am starting to see their developmental progress differ as well. I had two at once. My daughter did much better respiratory wise than her brother. She was never on an osciallator, and he could barely get off. My daughter had a grade II bleed and my son a grade I. What does this mean? I don't know, the neos didn't know, and frankly, there is no need to stress it now. I stood by my children's bedsides day in and day out. I talked openly and honestly with the neos and the team about what we were and weren't willing to do medically for our 23 weekers. I made the best decision I could with the information I had, and in my heart I know the neos did too. And trust me, they were not all gung ho about doing everything medically possible. They gave me an out even before it became extremely necessary and told me it would be okay if I decided to end support.I wish there was a crystal ball that gave the answers, that let us as parents, and let the Drs. as medical professionals, know what the best decisions are. This preview into the future doesn't exsist, and that is so hard. A parent of a 23 weeker who does extremely well may praise the neonatologists for giving their preemie a shot. The parent of the 23 weeker who has multiple disabilities may be angry with the neonatologists and perhaps wish resusciation was never attempted or support was ended. They may wonder why the neos never told them life was going to be this hard.And then there are the parents of 23 weekers who understand there was no crystal ball, and felt empowered by the NICU team who talked with them and gave them some control over their child's care. To these parents they may have prepared themselves for what could lie ahead, and recognize that they were in a terribly difficult position and made the best decision they could. And I hope that no matter what, ALL parents love their former 23 weeker, and although wish more than anything that they walked away from their prematurity with no negative affects, still do their best as a parent to show their child how loved and special they are.As a parent of two surviving 23 weekers, I will always be thankful that my children were given a shot at life by the NICU team. And no matter what the future holds, I am in the group who were educated as much as possible of the possible outcomes, and made the best decision I could as a parent who loved her children, and as a person who believes in quality of life.I think it is a lot easier to say what you would do without actually ever being in the position to have to go through with it. And that is true for both those who chose resuscitation and those who don't.

I hope this doesn't sound completely heartless, but here's my suggestion: Put as many of these babies as possible on clinical protocols, whether interventional or observational. Something is different between the kids who do well and those who do poorly and if we can figure out what the difference is, in the best case scenario we can do something to improve outcomes for the ones who do worse. And if we can't help the kids who are probably going to end up very disabled, at least we can give the parents better advice about probable outcomes and discontinuing care if we have better data to predict who will and will not do well. But we can't do that until we have the information. So maybe the best thing we can do for premies right now is to find out what is happening to them.

How about assembling all the "risk factors," like we do when we teach about SIDS, a similarly murky threat.

**Present Vermont-Oxford data r/t gestational age outcomes. For example, "24-weeker with 24% severely impaired by age 2";**Present real studies that may (or may not) correlate Apgar scores with outcomes.**Race/ethnicity data from credible studies--such as white males have worse outcomes than black females.**Factor in the likelihood of Grade III and Grade IV IVHs impacting negatively. From authoritative studies.**Look for PVL or diffuse small calcifications in white matter, using the newest imaging, reported in the most recent studies. (Of course, this testing must be available and must have been done early on in the baby's course.)**Other risk factors, such as maternal sepsis, cardiac abnormalities, SGA status.**Anything else, backed up by REAL data.

As we often do, all of us, great and small, in decision-making---divide the paper into 2 columns, with pros and cons, risk factors under "cons," and positives under "pros".

Under "pros" could be listed biological pros, AND the parents value-system which would accept a child with life-long disabilities, and the financial means to raise that child, even if the mother could not return to work. "Stable relationship" could be listed. "Parents in complete agreement" could be listed. "Excellent support system" could be listed . . . "Previous experience with a preemie" could be listed if applicable.Etc.

Parents might want to list their neo's opinion under one or the other column. Another neo's opinion (2nd opinion) could be listed, as well.

For single moms, or teen moms, or if the woman is on Mag or in hard labor, someone can start this list or draw it up for her and show it to her---this would be a person she trusts, a family member, or her doc or the neo.

This is hard work requiring forethought. This is the extra mile. This is ethics in-play. But is it that much more than going to the bedside of the woman in unstoppable labor with a preemie and describing outcomes to her for her gestational-age baby?

I really think this can work and it should be tried. Maybe it can work in many if not all cases. This is honest shared decision-making.

Come on, people, let's get un-stuck. Let's do more. Let's come up with some more imaginative solutions to our problems. Chris and Vic

I knew that I was having multiples and that I might deliver early. I thought maybe 35-36 weeks. I never thought 25 weeks. I had researched prematurity. I knew about ROP, NEC, CP, etc. Never once did “mental impairment” come up. I found that amazing. I envision a world where a pregnant woman gets accurate information at every check up.

*You are now 20 weeks pregnant! By the end of this week you will be halfway through your pregnancy. Your baby measures about 5.6 to 6.4 inches and weighs about 9 ounces. Your baby will also be moving a lot -- twisting, turning, punching, and kicking. You still may not feel this movement, or it may feel just like butterflies or stomach rumblings. Your baby is starting to grow hair on his or her head! Other fetal development that typically takes place around week 20 of pregnancy includes the following:

· A protective, waxy skin covering (called vernix caseosa) is forming to protect the baby's skin from the amniotic fluid · Delicate eyebrows are forming · If your baby is a girl, her uterus is starting to develop · Your baby's skin is thickening and developing layers, including the dermis, epidermis, and subcutaneous layer · Nail growth begins. Then, the handout or pamphlet could go on to discuss what would happen if you were to deliver today. One would be for each week and as the pregnancy continued the statistics would change.

I believe that Dr. Doug at Mayo had a print out, at one time, for 22-28 weeks. I used to have it saved somewhere, trying to get my hospital to use it. No, we can’t scare the parents. If you can’t agree on the statistics, then give information on the best sturdy, the worst and the one in the middle.

If I had cancer, no one would make any decision for me. I would be given the facts and I would be left to make a decision. I even get all the “rare” complications of a tonsillectomy. Since we supposedly don’t even try to “save” babies until 22-23 weeks, that’s 22-23 weeks that we have to educate the parents. Life is tough, hope for the best, plan for the worst.

My research into prematurity when i was pg with my twins landed me here ;) Which caused me quite a few sleepless nights but yeah, i did feel more informed about the risks. And extremely thankful, of course, when it all turned out well.

I think the greatest problem with trying to impart information about outcomes to parents before anything bad happens is that most people do not want to believe anything bad will happen to *them*. This is part of human nature, i fear -- you can offer studies about outcomes etc. but a lot of people will still just stick their heads in the sand.

There's also the "they already have kids" factor, or "they are young and can have more kids" factor. I have five kids, and have a positive screen for trisomy 18. Haven't had amnio yet, but my OB said, "even if your baby is affected (meaning terminal most likely) you already have a beautiful family." So, if I have five kids it's okay to have one die? Whether poor or rich, I think you cannot take homelife into consideration as much as look at the child and try to figure what's best for the child and also factor parental desires. They are the ones who will care for the child.

It's very complicated as you point out...and judgements are never easy from what I see.

Thanks, everyone. I'm all in favor of parents making the decision based upon accurate, honest information, but as redspiral and others have pointed out better than I can, that's not always easy to accomplish.

My son was born at 27 weeks, along with many other complications, he also had a bilateral Grade III IVH. Early on there really was no talk of letting him go, but we did have one doctor who was very frank with us about his quality of life in the future.(She was a great doctor who would lay it on the line and we respected her honesty) We once discussed with her that no one ever gave us the option of with holding life support. As she pointed out, we had given consent every step of the way. We were truly amazed by this, of course we wanted him saved and we did want medical treatment for him, but no one ever came up to us and said " If your baby's condition is extremely poor, do you want heroic measures taken, and if you do this is what all that entails." I wasn't awake at his birth, and by the time I was barely awake, the transport team was there to pick him up. Don't get wrong, I would have wanted to try everything to save him, but at the same time there is that question just because you can save someone should you? Frankly I feel more information should be availble from your OB. This is a discussion that should be mandated at visits at about 20 weeks, maybe if we make prematurity as common a topic at your OB as strech marks maybe we can increase women's knowledge of giving birth prematurely and the horrible compliations for the infant if that does happen. I am happy to report that although my baby has had more than ten surgries, he is doing great. He of course has some issues that we have to deal with, and he is developementally delayed because of his early birth, but he is catching up fast. I thank God for everyone involved in my medical care and his. So when your job gets to you, just remember that there are parents out there that are glad that this is the career you chose. I know I am thrilled that everyone that worked on my so was there for him.

It was less than 40 minutes from the time we realized something was wrong until my son was born at 23.0 weeks, less than 10 minutes from the time my water broke and we knew it was labor until he was born. He was crowning when I was placed on the delivery table. There was no time for informed consent. The best there was time for was a statistic that 50% of 23-weekers survive at my hospital and time to ask the question of whether we could change our mind and discontinue support if the prognosis was bad. 16 months later, my son faces many challenges, but has done shockingly well. If someone told me at 12 weeks that he would be born at 23, I don't think we would have continued the pregnancy, but at 23 weeks when we were seconds away from the birth of our child, that was simply a decision we could not make without giving him a chance. It's funny that no matter how informed you are, when it's your child you are about to have to make a decision about, all that "information" becomes much less relevant.

"Premies from homes of educated parents do better on intelligence testing and so on than premies from other homes, presumably because there is more stimulation offered to the child, more books read to them and so on."

I wouldn't necessarily agree that a person with a post-highschool diploma is properly educated. There is not a fine line to determine how much education goes on in the home. We may be able to asses the ability of a person to do well on intelligence tests to be a determining factor towards understanding and such....but intelligence factor doesn't always equate to the quality of life factor. Some children who grow up in "intelligent" homes actually are succumbed to far more psychological problems than those who grow up in plain and less than intelligent homes.

While this subject can be very touchy for most people, my opinion is that there has to be a middle or common ground that we all can find. I do appreciate that youve added relevant and intelligent commentary here though. Thank you! Hotels In Lisbon